Navigating marriage, motherhood, a child with special needs, work, a social life, and life's ups and downs with faith intact.
Category LifeScape
It’s been a while! My last post was more on the informative side of things. Therefore, I think it’s time for a more personal update. On that note, Augustus is absolutely THRIVING right now. It’s more than amazing. He is doing things we didn’t know if he’d ever do. One of his therapists even commented “I never thought I’d see the day…” I attribute most of his success to his applied behavior analysis (ABA) therapy. He has absolutely flourished since starting.
It is very common with autism to have extreme interest in certain things or objects. They say that an autistic child’s interests are often lifelong. Gus has taken a real interest in animals, especially jungle animals. In ABA therapy, he has a place mat with jungle animals on it and a bin of toy animals. Since those were introduced, the words have been coming. It’s also not unusual for interests or preferred objects to come and go, but animals, music, and vehicles of all kinds seem to be a stronghold for Gus.
At first, he was just saying the name of animals. I hate to say ‘JUST’ because that in itself was huge. He said “tiger”, “kangaroo”, “froggy” (see video at end of post), “ducky”, “elephant” (his version), “giraffe” (his version), “bear”, fish (or shhhhh), and probably more I’m not remembering off the top of my head. What’s adorable about Gus is that he tends to whisper when he’s trying out a new word or sound, so it can be easy to miss. Once he is more confident, he will say the word or sound out loud. For instance, he was playing alone at home with his animals and I heard him whisper “turkey” clear as day. He has never said “turkey” when playing with me or in therapy, but I caught him in the act.
He then jumped from just saying the names of animals to actually labeling them! As in on his jungle animal place mat, they could ask him “Where’s the tiger?” and he would point to it.
It’s also important for me and everyone else to understand and remember that just because he develops new skills, words, sounds, etc. it doesn’t mean he will use them on any kind of regular basis. For instance, he may say a word and we won’t hear it again for months…or even longer. What is amazing though, is that you can see him thinking and recalling just by the look on his face. The other thing to keep in mind is processing time. It takes Gus longer to process things. We need to be sure to give him time and help to instill the confidence that he can come up with and say things on his own, even if it takes a little longer. I was told that there have been cases where processing time has been up to 7 minutes. I just love to see him thinking and studying and trying. It absolutely breaks my heart sometimes when I see him working so hard and I see his little lips moving, but he just can’t quite come up with what he’s trying to label/say etc. His brain and his body just aren’t communicating correctly.
Along with processing time, we also have to keep in mind that Gus is VERY stubborn. Seriously, who would have thought Dane and I would have a stubborn child? (HAHA!) We have figured out over time that there a lot of things he can do, especially physically, that we just have to wait him out on and make him do himself. Because he struggles with some things, it’s just easier for him to let others help him, but in order for him to get stronger and learn to do things on his own, we have to wait him out. It’s a tricky prospect. For instance, in the Sensory Gym at LifeScape where he receives therapy, there is a ladder leading up to a platform then to a slide. He had been working on the ladder for a while in Physical Therapy (PT) and always required help. Well, one day he was super motivated in ABA and we watched him go up the ladder almost completely by himself. Then we knew he was physically capable. So, from then on, in ABA therapy, we would put him on the ladder and just wait him out and encourage him because we now knew he could do it himself. We’ve waited several minutes before, but he will eventually do it. The other tricky thing is his sensory needs and lack of safety awareness. If someone stands behind him while he is on the ladder he will lean backwards and pretty much completely just trust fall backwards seeking pressure. So, we figured out that we have to stand at an angle and not too closely behind him so he knows the only direction is up. This is just one example. We’ve figured out a lot in the last month or so.
Speaking of sensory needs, one thing that has revolutionized his learning and attention span is a specific kind of chair, a Rifton chair I believe is what they call it (see photo below). It is a chair that has a part that comes up in the middle between his legs and almost like foot pedal looking things on the floor at an angle that Gus can put his feet on. The chair also has a straight back and high straight sides that keep him a little more tucked in giving him that sense of pressure he craves and needs to better concentrate. He loves to put pressure on things with his feet, so the foot pedal type attachment on the chair allows him to push down when he feels the need. We went from not being able to keep Gus’ attention for more than 30 seconds TOPS (usually less) to up to several minutes now. IT’S HUGE!! Who would have thought a chair could make such a difference. Oh, the things I’m learning.
Rifton Toddler Chair with Adaptive Positioning. (This is the exact chair Gus uses, except his has a bar thing on the seat that goes between his legs.)
I am starting to feel more confident in my parenting all the time. I am starting to figure out what Gus wants and needs. In fact, I was even able to bring him back down from a sensory meltdown at church a few weeks ago. I was so proud of that! I took him to the cry room for a while and got him calmed down. We were then able to go back out and sit in our pew for the rest of the sermon. I wasn’t even completely horrified that he had ripped a page out of a hymnal causing an older lady to audibly gasp as if someone had passed out or something. (Haha!) Nobody knows him like his mama. I’m doing the best I can to understand what he needs from me and his surroundings in general.
I have a lot more to share. I got busy and behind; more later.
Signing off for now.
-AMom’sFaithUnbroken
OF NOTE: One of Augustus’ speech therapists said he could now probably be considered MINIMALLY VERBAL as opposed to nonverbal. We hope to progress to mostly verbal.
A therapy with a scientific approach to understanding and improving or changing behaviors. AKA Change the environment to change the behavior.
Wait…
What is behavior?
Seems simple enough, but before I go on, let me first express that often the word behavior is associated with “bad behavior”, but there is big importance in that little adjective before the word behavior.
Behavior is simply what we do and how we act.
The dead man’s test…
To better understand what a behavior is, we were taught to use “the dead man’s test”. Can a dead man do it? If he can, then it is not a behavior. I know, a bit confusing, but once you think about it and kind of test yourself it all starts to make sense.
How does ABA therapy work?
ABA therapy is not based on figuring out how and why one behaves, but replacing any given behavior with a more appropriate or beneficial behavior.
How is this carried out?
A lot of positive reinforcement and repetition.
The therapists chart everything, and I mean everything. Therefore, there is data to back up what behaviors are being improved upon or changed.
When & Who?
You most often hear about ABA therapy used for persons with autism BUT ABA therapy is also used for people in relationships and for elderly to help them better cope with memory loss and loss of certain abilities as they age.
It is important that children begin ABA therapy before the age of 4 to see the best results, especially in those with autism.
It is an extensive therapy with best results being carried out 20 hours a week.
ABA therapists are licensed psychologists that have completed a training program and obtained certification through the Behavior Analyst Certification Board. Based on what theU.S. Beareau of Labor Statistics reports, licensed psychologists must complete at least a bachelor’s degree.Psychology Todaystates that to obtain the Board Certified Behavior Analyst (BCBA) credential, the ABA therapist must complete at least a master’s degree and a specific number of hours of clinical education and experience.
ABA therapy is becoming more and more recognized as an effective therapy for anyone needing changes in behavior.
I was told by Gus’ first psychologist he saw when he was diagnosed with autism spectrum disorder and sensory processing disorder that ABA therapy was seen as the “gold standard” for children with Gus’ diagnoses.
The Controversy
ABA therapy is a very controversial subject among those with autism and parents of children with autism. As I do with everything in life, I extensively researched, studied, and consulted. Per my findings, I decided ABA therapy would be beneficial for my son. I read the horror stories from those that received the therapy in the past, and those who are vehemently against it. Thankfully, things have changed in the medical field and things aren’t as they used to be. There is still some controversy even with ABA therapy today, but I stand by my decision and am glad I did because at three weeks in we are already seeing amazing things.
Also, nothing is addressed or worked on in therapy without MY consent. I am 100% welcome to attend Gus’ therapy sessions, and I do.
Gus’ ABA therapist has and is working hard to build a relationship with him. She will be a big part of his life for a long time. He adores her and that will make things that much easier.
During this journey with my son, I have seen him with a lot of therapists. Some go through the motions, but then there are some that go the extra mile.
ABA THERAPY & GUS
What is Gus working on in ABA therapy? A little bit of everything. We set specific goals, and he is already nearing completion of some of them. He is working on eating with utensils and keeping his hands out of his mouth while eating. He is working on following verbal commands. He is working on using his voice to request things. He is working on communication in many aspects. He is working on conquering his fear of public restrooms. He is working on generalizing things. He is working on joint attention. He is working on appropriate play with others. He is working on so much more. All of his goals are broke down into steps, and as he masters one step we move on to the next until he has conquered the task and goal. He is thriving!
ABA Therapy & The Family
My husband and I also attend sessions with Gus’ ABA therapist to be educated in ABA therapy itself, as well as what we need to do at home to apply what he is doing in therapy at home. Gus is very smart. If we don’t have the same expectations of him at home as are expected of him in therapy he will figure out that he just has to work in therapy and home will be a free for all. ABA therapy also works with all of his other therapies and therapists to be sure everyone is on the same page and that he is shown consistency in all aspects. It sounds like we will also have meetings with all therapists at once here and there to go over things.
Applying things at home takes a whole lot of patience and a whole lot of time. While I am not perfect and sometimes let things slide, I try to remember that all of this hard work now while he is young will more than pay off as he gets older.
Our Schedule
Gus has been receiving ABA therapy for 3 weeks now. We started at 1 hour a day 3 days a week and quickly moved to 1.5 hours 4 days a week. This coming week, we plan to do 2 hours 3 days a week moving to 3 hours a day 4 days a week in July and going from there.
Gus also receives speech therapy and occupational therapy at home on Mondays and Thursdays in the morning before we leave for Rapid City. He also still receives occupational therapy, speech therapy, and physical therapy once a week at LifeScape.
Yep, that means we travel 83+ miles (166 miles round trip) up to 4 days a week. It’s been a spendy venture, but once we get going insurance will reimburse mileage; it just takes a while. I also had to quit my job, as there was just no way to schedule work around therapy and therapy around work. I still fill in when I can, though.
I take Ada (Gus’ older sister) with us 1-2 days a week. She attends part of therapy with him and eats lunch with him and the therapist and then works on joint play with him. Then, Ada and I go play outside, as she understandably has a very hard time keeping quiet and allowing Gus to focus. The other days of the week, Ada attends daycare.
It’s hard on me…and all of us, really. BUT what’s important to me is how Gus is handling it. As long as it isn’t too much for him it’s not too much for me. We are allowed to back off on therapy at any time we feel we need to. Gus is thriving right now. I keep in mind that a few years of this very intense schedule and intensive therapy will pay big later.
I also failed to mention earlier that Gus is the very first ABA therapy patient to be accepted at LifeScape in Rapid City, SD. Until now, ABA therapy was not offered at LifeScape’s Rapid City location. For a long time, we were adjusting to the fact that we would have to move to Sioux Falls, SD part time for an undetermined amount of time. Talk about STRESSFUL, but we were ready and willing to do what we thought best for our family, and kept moving forward, which is why Gus was accepted as the first patient; we already had everything done and ready to start at LifeScape in Sioux Falls, SD, so they were able to just transfer all of that information to their Rapid City campus.
I’ll keep this shorter by just sticking to the topic of ABA therapy in this blog post. We have a lot going on, and I have lots I’d love to share, but will do so at a later date.
Thank you for reading and taking the time to learn a little more about a life a bit different.
I’m learning all the time, and am always happy to share.
Autism Awareness Month April 2019 – World Autism Awareness Day April 2nd, 2019
It’s been a while since I have had a chance to write a blog post. I decided to make it a priority today. I will start off with one of my “A Day in the Life” segments. I find these most informative, as they often answer a lot of questions I wouldn’t otherwise think to address. I will then give you an insight into the progress we are making, and where we are at now.
A Day in the Life Wednesday April 3rd, 2019
6:00 AM – My alarm goes off, and it’s time to wake up and get my workout on. I don’t go to a gym or anything, just workout at home through a program I joined.Yes, you read that right. I am on week FOUR of working out 5-7 days a week, and attempting to eat cleaner. Why? I realized that life isn’t going to slow down anytime soon, and that I NEED to take care of myself to have the energy I need to keep up with my life. I have a new mantra for what I put into my body: FUEL vs FILL. There are already so many things in life I have no control over, and even more-so for me than your average person; and my body is one thing I can control (to a point). I have plenty of reasons to be depressed and shutdown, and I sure don’t need my body working against me when keeping those things at bay. Weight loss will be a great side effect of these changes, but the REAL reason I’m doing it is to have more energy and better health. I’m also working on not smoking. (I have only had a few in the last month when I was out drinking), and I have only drank once in the last month. I’m just trying to focus on what’s good for me.
6:30 AM – Cool down, get my breakfast ready to go (waiting to use my blender until the kids wake up) and share my workout on my accountability group.
6:45 AM – Shower and get dressed.
7:00 AM – Get a bag packed for Augustus for our trip to Rapid City, SD, for therapies at LifeScape, load the car, get breakfast ready for the kids, and start waking the kids up. (Gus is usually awake in his crib already making noise and jumping and laughing.)
7:00 – 8:00 AM – Give the kids their breakfast. Gus gets breakfast in his crib sometimes, as he likes to take it slow in the morning. I usually give him a waffle and some juice in a sippy cup. He usually begs for more food after he is up and dressed, but I try to hold him off, as we have feeding therapy first thing at LifeScape. Ada comes out and eats her breakfast. Then I get Gus dressed and ready for the day-no small feat. Dressing him is like dressing a small alligator. He likes to roll over on his stomach, throw his clothes on the floor, undo his diaper tabs, take things off the walls, occasionally bite, wiggle, giggle, and think everything tickles. Then the hard part, convincing Ada to get dressed and ready for daycare. This goes one of two ways, absolute refusal, tears, and drama or absolute cooperation. Thankfully, this Wednesday was absolute cooperation. I also have to keep an eye on Gus while getting Ada dressed, as most mornings he is in the kitchen searching for food, opening drawers and cupboards, grabbing dishes out of the sink, etc. Eventually, if Dane is home, I leave Gus with him and take Ada to daycare and gas up the car, as was the case this Wednesday.
8:15 AM – Get Gus strapped into his car seat-no small feat. He wiggles and chews on the straps and I get some good cardio in.
8:25 – 9:50 AM – Drive to Rapid City. Gus usually rides in the car very quietly besides a squeal or a clap here and there. He is generally content just chewing on his chewelry necklace or snuggling his blankey. He stays awake the whole time. I struggle to stay awake EVERY time, no matter how tired I am. If I am taking him alone, I listen to an audio book on my phone, which helps a little. I drink my breakfast shake on the way and occasionally slap myself to wake up when it gets bad (yes, seriously). This Wednesday we drove through rain the whole way to Rapid City, and then it started snowing right as we pulled into LifeScape. Halfway to Rapid, I realized I forgot to take my morning pills. UGH. I’ve only been taking the same things for like 9 years, but still often forget.
9:50 – 10:00 AM – We pull into the parking lot at LifeScape. As I said, it’s snowing, Boo. I get Gus out of the car and hold his sweet little hand and grab our bag and we head inside to check in. Then, we hang out in the waiting room; and by hangout, I mean I chase Gus around. I usually always need to use the restroom once we get to LifeScape, and unfortunately, Augustus HATES the bathroom there. I feel so badly, but if I’m alone, I have to take him in there with me. He stands there in terror and panic while I try to pee as fast as I can, all the while praying he doesn’t open the door and bolt. Then comes the worst part, the toilet flush. He absolutely loathes that toilet and the noise it makes when it flushes. So, I flush and run to the door as fast as possible so we can get out of there before he has a full-on meltdown. Hand sanitizer it is. No hand washing for me in these instances. We head back to the waiting room and wait for our turn with Miss Nicole, our occupational therapist (OT). The nice thing is, we are very familiar with all of the other families in the waiting room, as we see them weekly. They are all so kind and understanding and even very helpful keeping Gus contained and somewhat under control. They also have good advice to offer, as Gus is one of the younger kids there in this time frame. Their kindness, help, understanding, and advice is priceless and immensely appreciated.
10:00 – 10:30 AM – OCCUPATIONAL THERAPY with Miss Nicole Miss Nicole comes out and greets us and gets Gus’ attention and then we head back to our obstacle course. We do an obstacle course every week consisting of different tasks for Gus to do. Before we complete our obstacle course, we practice “good sitting” and cooperation while taking our shoes off. This can be a very daunting task for Gus, as he rarely sits still, but some days he does just fine. Our obstacle course usually consists of 3-4 tasks that help with our motor skills and finishing tasks. For instance, this week we crawled through a tunnel, we jumped on a trampoline, and we threw beanbags at some blocks. Gus is required to complete each task before moving on to the next. After the obstacle course, we again practice “good sitting” and cooperation to put our shoes back on and head to feeding therapy. FEEDING THERAPY with Miss Nicole We head to the kitchen. Gus then climbs up onto a step stool and Miss Nicole helps him soap, wash (“make bubbles”), and rinse and dry his hands, and then throw away the paper towel used to dry his hands. He is making fairly good progress with this, as he seems to like running water coming out of faucets and will even try to do this task himself at home in the bathroom. Then, Gus is seated in a chair just his size at a table just his size. Miss Nicole sits next to him, and has the food items for the day ready and prepared and on a plate ready to go. Gus and Nicole then try the foods on the plate; some familiar/preferred, and some new/non-preferred. They then experience the texture of the food, which is huge for Gus. He has to touch food before he will try it. Miss Nicole describes the texture and consistency for Gus. Then they try the new foods by first just touching it to the lips and going from there. Then they work on drinking from an open cup. As I said, texture and consistency are EVERYTHING to Gus; so, his first instinct with any open cup is to stick his hand in it. He is getting a bit better with this. Nicole helps him hold the cup (a handle on each side) and practice bringing it to his mouth. She has to remind him to use his lips, by smacking her lips together and saying “lips” and then he successfully takes a drink. We practice this at home, too. Then, Nicole works with Gus on his utensil skills. So far, we have started with a spoon. Like I said, Gus just wants to touch everything with his hands. That’s why we are sure to let him touch the food before we move on to using the spoon. Nicole helps Gus grip the spoon and the container he is eating out of using “hand over hand”. We practice this at home, too, and it is a lot of work, but he will continue to progress. Gus has progressed in leaps and bounds when it comes to the act of eating itself. Nicole has taught him to take small bites of foods, rather than sticking a whole item in his mouth. Then, once Gus and Nicole are done with trying their foods, etc. Nicole gets Gus cleaned up, which is a challenge, as Gus does not like having his face touched. Right now, we are working on him allowing his face to be cleaned with his help. Nicole has him hold onto the wet paper towel with her, and she is sure to state what part of the face will be wiped off, and using “hand over hand” has Gus help her wipe that part of his face off until his face is clean. Then they throw away the wet paper towel and we head back to the waiting room to await the next therapy session. Gus has come a long way in being able to sit for longer periods of time, which also helps with his feeding therapy.
10:30 – 11:20 AM – NORMALLY, we would have speech therapy next with Miss Jodi, but Miss Jodi was out this week. We had an hour wait until physical therapy at 11:30, so we decided to head out and come back rather than waiting in the waiting room for an hour. Gus has been in need of a haircut for a LONG time. I have cut his hair at home before using clippers, and it is never easy and never fun for either of us. In fact, we usually both end up in tears. Anyway, I decide we will brave it and stop at the Cost Cutters not too far from LifeScape and then be back for physical therapy. Let me just say, I knew it wasn’t going to be pleasant or easy, but also knew it was a necessary evil we had to endure. I feel sorry for the sweet unsuspecting lady that was lucky enough to not be busy when we walked in. OUR FIRST OUT-OF-HOME HAIRCUT – a fresh level of HELL I first explained to the stylist that Gus had autism and did not handle having his head touched very well in general, and that this was his first time not at home, and would be a learning experience for all of us. We first tried to see if Gus would sit on a booster in the chair alone – no go. I held him. We tried to get a cape on Gus. First of all, he took the first tissue thing they put around your neck before the cape and bit it in half. So, I held his arms down and we got the tissue thing and the cape on him. Then, we tried to get a cape on me, which was only somewhat successful. At first, he was entertained by the mirror and such. Then, the stylist had to try to get all the tiny knots out of his hair. He was not having it! He swatted at the comb and screamed and wiggled and was pissed off in general. I can’t blame him. The stylist got out the spray bottle to wet his hair down, and he absolutely hated that, too. We had some suckers in our arson, and whipped one out at this time; early in the game. That worked a little bit for a little while. He was still distressed and swiping at his hair and face. Therefore, his face was a sticky mess. Because he was moving and rubbing at his face and hair, a bunch of hair was stuck to his sucker sticky face. Then he rubs this into his eyes. Things get worse, and worse, and WORSE, and we aren’t even close to done. To sum it up, we went through 3 suckers, 3 wet washcloths, and we both had hair ALL OVER US. A toy worked to entertain him for a little bit, and that was pretty much the saving grace to get his hair even close to finished. A couple of other stylist stopped by his chair to help. They offered him a spray bottle of water to play with, some clips, you name it. He WAS NOT HAVING IT. NONE OF IT. We resorted to me having to hold his little arms down and keep him as still as I could and the stylist working as fast as she could. Keep in mind, this kid is the size of a BIG 4 year-old and isn’t even 3 yet. He cried, screamed, yelled, fought. My little man ended up so upset he nearly threw up. I decided we were done. It was good enough. We were able to get all of his hair cut except for over his ears. We just couldn’t find a way to get to those spots without him being in danger of getting hurt. The stylist was absolutely amazingly perfect throughout the entire situation. She even offered to have him come in another time when he was “having a better day” to finish up above his ears free of charge. What I didn’t have the heart to tell her was that this was a good day for Gus, one of his best. Anyway, I tipped this amazing lady $29, and that probably still wasn’t enough for the 40 minutes of hell she endured. You, lady, are a saint to this mama! I guarantee you, if I had not already been prepped and prepared for how terrible this could be, I would have had a meltdown myself. I would have cried for me and Gus. We got done with this experience just in time to head to physical therapy. We were both exhausted. I was just a bit emotional and felt spent. I truly considered cancelling his physical therapy appointment, but because we finished in time, I knew we needed to show up, and he needed to work. DO YOU KNOW HOW BAD THIS MAKES ME FEEL? I feel terrible that this task is so hard for him and will be something he has to face for the rest of his life.
11:20 – 12:00 PM – We drive back to LifeScape. The tears are done. I push my feelings and everything aside and get ready to do what we need to do. In the waiting room, Gus sits quietly with his blankey, his favorite comfort. One of the moms we see there weekly comments that she has “never seen him so calm and quiet”. I then explained that we had just had our first out-of-home haircut experience and that I thought he was “shell shocked” by the experience, as was I. I could see the light bulb turn on in this woman’s head. She instantly understood. Do you know how good that made me feel? She patted Gus on the back and said she understood. She told me that it was the same way for her son for a long time, although he was finally better about it now (I believe he is 9?). The other familiar faces in the waiting room also shared words of encouragement and compliments on his new haircut. It takes a tribe, I tell ya, and who knows where you might find more tribe members. PHYSICAL THERAPY Miss Teresa comes out and gets us for physical therapy. In physical therapy, Teresa helps Gus to work on his abdominal strength, going up and down stairs, his coordination, his balance, and various other things he struggles with physically. He is also making good progress with these things; slow but sure! Teresa has to work very hard to keep him on task and does an amazing job with him. She finds different toys and things to help motivate him to do the exercises he needs to do. She definitely gets a workout in, too. He loves to be all over the place in that gym, and get into all the cupboards where all the cool things are.
12:00 – 1:30 PM – When we are done with physical therapy we head out for home. Some weeks we stop and grab some lunch. I enjoy these little lunch dates with my little man. This week, though, after so much trauma from the haircut and the questionable weather, I decided it was best we got on the road for home as soon as possible. I stopped at the Arby’s drive-thru and got something small and “healthy” for a fast food place. Then, we were on the road home. I turned on my audio book, and Gus fell asleep and slept all the way home.
1:30 – 4:00 PM – Most often, when we arrive back in Philip, I go pick Ada up from daycare right away. Since we were home a little earlier than usual, I knew it was nap time for Ada at daycare, and knew Gus would sleep a bit more; So, I went home and unloaded the car and got Gus inside and put him down in his crib after a diaper change. I then went and laid in my bed for a bit and tried to rest some, too. (WHEW!!)
4:00 – 5:00 PM – We pick up Ada and come home. Since Gus hadn’t eaten since his therapy from 10-10:30, I knew snacks and an early supper was needed. The very first thing we did was get in the bathtub since Gus had hair from his haircut all over. Ada claimed she didn’t want to take a bath and just wanted a snack. So, I got Ada a snack and got Gus in the tub. Ada eventually wandered in and wanted to take a bath, too, and jumped in with Gus. The usual bath time shenanigans went down. Gus threw cups full of water and toys out of the tub and caused a small flood. They fought over toys. They played together nicely. It was a fight to wash Ada’s hair. The usual. Gus got out first and I wrestled him into some pajamas. Then Ada got out and insisted on wearing her towel, which means before long she will be running around stark naked…her favorite. Some days, it’s not worth the fight to keep her clothed.
5:00 – 6:00 PM – Wednesday evenings kind of end up a blur for me…I made the kids some chicken nuggets and cheese quesadillas. They both happily accepted. We had the usual suppertime drama of Gus trying to steal Ada’s food after he ate his causing yelling, screaming, whining, crying, and fighting. I played referee. Then I got everyone cleaned up.
6:00 – 8:00 PM – Dane made it home sometime around 6. Amen. I didn’t tell him about Gus’ haircut in hopes he would notice. Did he notice? No. I eventually hinted at it. He still didn’t notice. I eventually just told him. Gus was just ornery and we could not keep him out of the kitchen, off of the table, out of the drawers and cupboards. It was constant. No “deep couch sitting” as those Swiffer commercials talk about. I had a snack of carrots and guacamole, which means the kids stole carrots and they ended up in various areas of the house and ground into the carpet. Gus did eat some. Then I hear Gus start to wail. Come to find out, he got his leg stuck behind the couch between the couch and the window. Dad got him out and he was happy. The TV was on and Ada decided to cuddle up with Dad. I followed Gus around the house attempting to keep him out of trouble. He finally settled down a bit before 8 after jumping on furniture, putting things he’s not supposed to in his mouth, and squealing and running around.
8:00 – 8:30 PM – BEDTIME Gus still sleeps in a crib. That’s our only way to keep him safe and contained at night. I am positive he could crawl out if he wanted to, but he doesn’t. Thank goodness. He is getting really big for his crib, but it’s still working so far. Putting Gus to bed consists of changing his diaper, finding his blankey, and taking his chewelry off. He HAS to have that blankey at bedtime. I would hate to know how many hours of Dane, Ada, and my lives have been spent looking for that blankey at bedtime. Gus is put in his crib with a sippy of water and his blankey, pillows, blanket, and stuffed animals. Gus usually stays up jumping, jumping, and jumping in his crib. He also bites his crib railing now. We have to keep his crib pulled away from the wall and his bookshelf or he will bang his crib against the wall and grab anything he can off of his bookshelf. Sometimes, he falls asleep fairly quickly (like in 30 to 60 minutes). Sometimes, he stays awake until the wee hours of the morning. We are all used to this, and thankfully he’s happy just doing his thing. Dane and I refer to it as “Gus being up partying all night”. This comes and goes and is just a part of who he is. This Wednesday was stressful enough that he was out fairly quickly. Ada insisted upon sleeping on her bedroom floor. Ok. Whatever. She was out of her room several times for various reasons.
8:30 – DAY’S END – Dane, thankfully, agreed to get some supper made. I ate supper and decided to go to bed. Ada was still wide awake. She eventually ventured into Dane and my room and laid down with me. I have no idea if or when she fell asleep. I woke up at one point and she wasn’t there. Apparently, she had ventured back to her room and went to sleep.
UPDATES/PROGRESS – shortlist Ada turned FOUR on the 28th of March. Gus seems to like the color green. He is interested in any green animal. Ex: Snakes, alligators, birds, frogs, etc Gus now says “SH” when he sees fish. Gus will sometimes whisper “go” when we use “ready…set………” Gus says “ca” or sometimes “cat” when he sees one. Gus is still very interested in cars and will say “car”. We have discovered he tends to whisper when attempting to speak and not just making noise. He says “da” and “dada” on occasion. He is getting better about saying at least the first letter of some words. We are still using PECS and he is making some progress with this, although it’s still not his favorite or preferred method of communicating. We had to put a child lock on the pantry to keep Gus out of it. He says “ssss” when he sees a snake. He is responding to certain phrases such as “no throw”, “good walking”, “walking feet”, “no fall”, “stand up”. He is doing a lot better with eye contact. He is doing better having “good walking feet”, as in he doesn’t randomly lay down on the ground as often. He is realizing he needs to hold someone’s hand before taking off after we get out of the car, and will often even reach for my or Dane’s hand. He is getting better at attempting to help when dressing him in the morning. There is much, much, more but nothing more I have the time to explain.
THERAPY Gus receives therapy 4 days a week. Gus is being evaluated for Applied Behavior Analysis (ABA) therapy this coming Monday in Sioux Falls.
Gus on Thursday rocking his new haircut, comfortable at home eating a waffle.
was our team name for the LifeScape MallWalk at the Empire Mall in Sioux Falls, SD. Our fundraising goal was $500, and we smashed that goal bringing in a total of $1175! That wouldn’t have been possible without the love and support of our family and friends. We couldn’t have done it without you, and we are so thankful. Considering we were one of the smaller teams signed up, we made a whole lot of money for the LifeScape Foundation. A total of $92,910 dollars was raised for MallWalk25. Very impressive!
I think Ada probably had more fun than Augustus at MallWalk. It is SUPER kid friendly and so, so much fun! There was a DJ and performers and dancing to get everyone pumped up. There were clowns, mascots, superheroes, Disney Princesses, facepainting, balloon animals, a photo booth, team photo areas, and more.
Surprisingly, Ada was all about the superheroes. She spotted Batman from afar, and her goal from then on was to find him, which we did.
Everyone present, staff, superheroes, and guests in general, were so kind.
Then came the actual walk itself. Each team received a sign to hold up displaying their team name and made a big loop around the mall, and the Empire Mall is not small. I don’t even really know how to describe this moment. It was emotional for me. It is one HUGE group of people, all with an understanding of disabilities or having disabilities themselves all together for one cause in one building with one goal. It’s big and caused big feelings. Like I said, I just cannot accurately describe it in words. There were so many people there. For the walk, it is one giant snake of people, no gaps, around the entire mall. Unbelievable.
A couple of my husband’s cousins and children came to MallWalk to get in on the fun and walk with us. We had a blast!
Family Time
The MallWalk was a great reason to get out of town and spend some time together as a family. Like I said, it is a very kid friendly and family oriented event. We arrived the day before the walk to preregister and have some family time. We went to a Build-A-Bear Workshop for the first time, and Ada had a perfect experience there.
The kids had a lot of fun playing on the rides at the mall, too.
This is not to say things went off without a hitch…
We stayed in a hotel Friday and Saturday night. We do have family in the Sioux Falls area, but Augustus has issues with new environments and sleeping, and a hotel is our best bet, as he can have complete darkness and has stayed in hotels before so somewhat knows the routine.
We always bring a pack-n-play for Gus to sleep in. He is far too wild to calm down and relax and go to sleep on a bed, and his pack-n-play is familiar to him. I have no idea what will happen once he outgrows his crib and pack-n-play.
We were on the second floor of a 3 story hotel so there were people above and below us. Gus never just falls asleep. Even at home, he is often awake for hours in his crib. Dane, Ada, and I have grown accustomed to sleeping through his jumping, squealing, laughing, and noises he makes. Granted, at home he is in his own room with the door closed, which muffles some of it.
The hotel was a different story. He stayed up until 1:30 AM jumping, squealing, screeching, flopping, giggling, and just being plain noisy. We were quite concerned we were going to get kicked out of the hotel. Dane and I tried everything we could think of to try to calm him to no avail. This kept Ada awake, too.
Therefore, after MallWalk, which was in the morning, and lots of hard playing with cousins, Ada definitely had quite the attitude, as she was just plain wore out. The next night did go quite a bit better.
Thankfully, the children generally travel pretty well.
All in all it was a great time for a great cause.
I’ve been keeping a sleep journal for Augustus so we can discuss his sleep with his doctor and maybe find a better way for all of us to get better sleep!
Thanks for reading and thank you for your support!
Holla – as in we do a lot of “Holla!” and “Hello!” catching up with family and friends; and daze – as the hustle and bustle of the season seems to fly by while we are in a daze.
Truth be told, I have forever been a bonafide Grinch! For whatever reason, the holiday season has always been a time of stress, dread, and wanting the time to pass quickly for me.
This year was my most festive and least dreaded holiday season thus far, which I attribute to my children.
Like the Grinch, my heart at one time was two sizes too small. With the birth of my daughter, my heart grew by one size; and with the birth of my second child, my son, my heart grew by another. That’s my theory anyway.
Holidays with a two and three-year-old are stressful, but add in some travel and that increases the stress level. Then, add in that one of the said children is nonverbal and in the process of learning to communicate and has ASD and SPD, with some pretty big sensory issues that effect basically every aspect of life, it makes for a very unpredictable and fly by the seat of our pants adventure. But truly, who am I kidding? Every day we fly by the seat of our pants on this big adventure: life.
Thanksgiving
Thanksgiving was spent a state away visiting my husband’s family. Thankfully, the children travel pretty well, so car rides really aren’t too eventful.
We were able to meet many new family members on Thanksgiving. I’m talking little ones we hadn’t yet had the opportunity to meet since their birth. We also had the opportunity to introduce our children to cousins and second cousins they hadn’t yet had the opportunity to meet. There were many little ones around.
The meal was delicious, and my husband’s grandma is an amazing cook/baker and prepared the entire meal for all of us.
Ada is at an age where she can play with the older kids on her own and doesn’t require so much supervision. That makes things quite a bit easier on my husband and me. She had a lot of fun playing all day, and ate at the “kids’ table” with the other kids.
Mealtimes are always a challenge, as Augustus has many issues with food and the mechanics of eating so it’s always a chore to figure out what he will eat, how he will eat it, where he will eat it, and the clean up of the giant mess afterwards. My husband and I usually have to eat in shifts. It’s really not an option to seat Gus at the table or even on one of our laps, because he has a reach like you wouldn’t believe and will stick his hands in everything. Augustus’ food preferences change often and vary from day to day. He is receiving feeding therapy at LifeScape to help him be able to deal with a variety of foods and learn to eat them in a more appropriate manner. He struggles with this because of his autism and his sensory issues involving all senses. In therapy, he is working on things such as how to drink out of an open cup and taking one bite at a time and being able to tolerate more than one food at a time on his plate, etc. He has to use a sippy cup unless we are practicing using an open cup because his very first instinct is to touch any and everything. Therefore, his hand instantly goes inside the cup. If he is eating one food and another is accessible on his plate or in front of him, he will remove the food in his mouth and throw it on the floor and try the other food. It’s confusing and hard to explain, but in short, he has big issues with the actual act of eating and tolerating food and their tastes, textures, smells, etc.
Thanksgiving basically went off without any major hitch other than that while playing, Augustus decided to try to pick up his one-year-old second cousin by his hair. He did also try to take the tablecloth off of the table while his dad was holding him at the table after lunch and did spill a cup of soda. He made a less than usual mess with eating. All in all a pretty successful meal and fellowship with family. We were even lucky enough for Gus to get a nap in while we were there!
Christmas Cookies
A bunch of family members met at my mom’s house a few days before Christmas to frost and decorate Christmas cookies. Even though I knew there was no way Gus would appropriately participate, I let him try. Of course, he just ate the cookie and wanted to get into things and make a mess. That’s okay. Like I typed, I knew that going in. I do have to admit that I had a bit of a hard time with it because Gus and I were unable to participate and had to spend some time outside. I felt bad for him and bad for Ada because I was unable to help her out with this festive and memorable task. Of course, there was plenty of family there to help, but really I am best at keeping an eye on Gus and predicting what he’s going to do and best at calming him, etc. But, as I’ve mentioned before, a lot of things sting and there is just a lot we are all going to have to accept and get used to.
Christmas Eve Our First Sensory Meltdown
Christmas Eve was spent fairly close to home (30 minutes or so away – with all the traveling we do, 30 minutes isn’t much) at my husband’s sister’s home with my sister-in-law, my father-in-law, my future brother-in-law, my nieces, and a few others. We were served New York Strip steaks and lobster tails with all kinds of other delicious foods.
We showed up early so the kids would have time to play with their cousins. It started out pretty well. They have a nice toy room the kids played in. Granted, we are not sure if Gus ingested some small toys and things we didn’t know were there until later when we saw him put some in his mouth. Either way, he hasn’t had any issues since, so he’s fine.
Before supper Gus had what I would call a “sensory meltdown”. To explain, a lot of kids with ASD and SPD are hypersensitive to lights, smells, pressure, etc., but Gus is hyposensitive and wants all kinds of sensory input to include pressure, jumping, etc. These meltdowns can happen at any time and are exacerbated when he is tired and when he is not in his own environment with a lot of new people and new things around. Not to mention, it’s Christmastime so there are lots of lights and decorations and gifts. Unlike a hypersensitive meltdown where a child wants quiet, calm, and familiarity, Gus wants input and lots of it. He absolutely would not sit still and was just getting out of control. I eventually took him into a bedroom and turned the lights down and turned on a familiar television show. I let him jump on the bed, as jumping is one of his favorite things. He jumped, he rolled, he was all over the place. He bit me, he scratched me, I was eventually in tears. Yes, children Gus’ age often bite, but for a very different reason. Gus bites because he likes oral sensory input. That’s why he wears a chewy on his shirt so he has that input when he needs it. When using his chewy, he is often able to focus better on tasks, etc. At this point, the chewy was no good, and he was biting me for sensory input. He was so out of control that I ended up sitting on the bed and seating him between my legs and wrapping my legs around his to give him the pressure he likes and to keep him from being destructive and biting and scratching. I then rocked back and forth to give him some vestibular sensory input as well. Nothing was working, and I felt it was best to take him home, but my husband did not agree and said he’d take over for a while. So, as usual, we had to trade off and on so we could each eat and get Gus fed. This was not Gus’ first sensory meltdown, but his first since his diagnoses and me actually understanding what was going on. It’s so hard when this happens, because he is not in control. He is just doing what he feels his body needs. We thought we had gained some ground with his biting, as he hadn’t bit anyone for a long time. Recently, he bit his speech therapist and my husband and me. I plan to talk with his occupational therapists about a sensory diet for when these meltdowns occur. A sensory diet is tools and activities that help a child get the sensory input they need to again feel regulated and end meltdowns. This will involve a lot of trial and error.
As I sat there restraining him and rocking him back and forth and feeling where he bit me throb on my shoulder, I couldn’t help but look to the future and wonder if things will always be this way. What happens when he’s bigger than I am? He’s already tall and a big boy and it’s no easy task to pick him up, etc. Hopefully, with time, trial and error, and his therapy we will be able to help him learn to self-regulate.
It was still overall a good evening, although a very tiring one, as I had a lot to do once we got home, too. I am glad that the kids got to play with their cousins, and Gus did eventually settle down and calmly played in the play room later.
Although I really wanted to take him home and let him and I be in our calm place, I am glad my husband didn’t let me because it’s important for him to be with his family as much as possible and for us to figure out what triggers meltdowns and how to deal with them. It’s just a part of our life now, and we need to get used to it.
Christmas Day
In my unusually festive demeanor this year, I decided I would host Christmas at my house for my family. I invited my parents, my father-in-law, my sister, her fiance, and my niece. I did this in part because I knew it would be a lot easier on Gus and all of us and because I live in the house my father grew up in, and I knew he would really like to celebrate a holiday with his own family in his childhood home.
Not only did I host and invite everyone over, I took on the task of preparing all of the main dishes to include a brined turkey, a pork roast, mashed potatoes, 2 kinds of gravy, and biscuits. My husband made some amazing macaroni so the kids would have something to eat for sure, and he even decided to make an apple pie that was seriously the most delicious apple pie I have ever tasted in all of my life. My sister and mom did help out by bringing appetizers and desserts as well. Man, I ate so much it was just ridiculous. That’s what it’s about, though, fellowship and eating, being merry, and rejoicing and remembering the reason for the season.
Christmas Day was a breeze in comparison to Christmas Eve. The kids were in their own environment and it made things so much easier for Augustus. When he got to a point where he was tired, he simply laid down and went to sleep. Unfortunately, he fell asleep just as we were about to open gifts. I say unfortunately because my family and I wanted to see him open his gifts. It was not unfortunate for Gus. He was in his environment and comfortable and needed sleep; so, he slept rather than having a sensory meltdown not wanting to go to sleep because of all the sensory input around and wanting more.
All in all, Augustus doesn’t care about opening gifts or getting presents. Yes, this is sad in a lot of ways. He’s not feeling the excitement and joy of the season. It’s also okay though, because Gus is almost always happy because he doesn’t worry about things like holidays and gifts. He lives every day seemingly not worrying about the past or the future. When it comes down to it, he is neurologically different than most, but maybe he is in some ways neurologically superior because he doesn’t waste time on things and doesn’t sweat the small stuff. He is a lover and he is a worker. It amazes me to think how hard he works every single day just to do the things we all take for granted.
Ada enjoyed the magic and festivities that most kids love during Christmas. We left cookies and milk out for Santa, and even carrots for the reindeer. Santa even left her some cookie crumbs to eat, which she was super excited about. When asked what her favorite gift was she replied “The candy!” I couldn’t ask for a better daughter. She is the perfect sibling for Gus. She has a heart of gold, and I plan to nurture that. She is also a very strong willed little firecracker when she wants to be, which I also plan to nurture. A perfect combination.
The above was our holidays in a nutshell. I wouldn’t change it for the world. This is my messy, happy, sad, confusing, frustrating, enthralling, exhausting, amazing, and blessed life. I have been given this life and these circumstances for a reason, and I’m here to show everyone that it’s all meant to be.
I hope you all had a memorable and enjoyable holiday season.
It’s an annual event held by LifeScape to raise funds for the LifeScape foundation.
What is the LifeScape Foundation?
The LifeScape Foundation develops, manages, and distributes resources through donor-centered collaboration to sustain and enhance the lives of children and adults with disabilities and their families who are served by LifeScape.
Their pledge is to always be there. Stating: “Our mission is to provide resources to enhance the lives of children and adults served by LifeScape.”
There are 2500+ individuals served by LifeScape throughout SD and the region!
All about LifeScape
LifeScape has locations in Sioux Falls, SD, Rapid City, SD, and Sioux City, IA.
LifeScape’s mission: “We empower children and adults with disabilities to lead fulfilling lives.”
Their Vision: “All people are valued and respected.”
Their Values: “Integrity, Compassion, Fiscal Respondibility, Collaborative Relationships, Excellence.
LifeScape offers so many services, and as mentioned above, serves 2500+individuals, my son being one of them.
Services offered:
Inpatient Rehabilitation and Medically Conlmplex Care (birth – 21)
Therapy (all ages)
Rehab Physicians (all ages)
Special Education School (residential and day students through age 21)
Orthotics, Prosthetics, and Mobility Solutions (In partner with Rehabilitation Medical Supply)
Pathways to LifeScape Specialty School (training for successful transition to adulthood for students aged 18-21 with moderate to severe disabilities)
Residential (children and adults)
Conflict-Free Case Management (Amen!)
Family Support 360
Day Services for Adults
Supported Employment
Autism Services
Camps, Training, and Social Skills Groups
Retail Services
Center for the Arts
Swimming Lessons
What LifeScape Means to My Family
First of all, I am beyond thankful that South Dakota has LifeScape. Many states aren’t as fortunate.
My family’s journey with LifeScape started in the Summer of this year (2018). My husband and I had some concerns about our son, and our son’s primary care physician referred us to LifeScape in Rapid City for an autism screening, which then led to an autism evaluation at the LifeScape in Sioux Falls.
Our relationship with LifeScape continues to this day, and will only become more significant as time goes on. Right now our son, Augustus, receives three separate therapies at the LifeScape in Rapid City on a weekly basis.
Come this summer, when he turns three, we will be looking at some other options for more intensive therapies at LifeScape.
We also want to incorporate the swimming lessons they offer into his therapy, as he has no fear of bodies of water and we want him to be safe.
I had heard of LifeScape before and their outstanding reputation before I even had children of my own. When my son was diagnosed with Nonverbal Autism Spectrum Disorder and Sensory Processing Disorder, I knew that LifeScape was the best thing out there for him. Our family is willing to do whatever it takes to get him the best therapy out there to ensure his future is as bright as it can be.
My husband and I adore all of his therapists and are eternally thankful for his caseworker. The atmosphere at LifeScape (both in Sioux Falls and Rapid City) is one of absolute acceptance, care, and friendship with the utmost professionalism.
Until a disability directly effects your life, it’s difficult to understand what this is all about. What I can tell you is that LifeScape is near and dear to my heart and that if you have anything to give, even just $1, it’s so worth it to know you are helping families like mine and so many beautiful, unique, tough, and unfortunately often misunderstood individuals.
If you are close to a LifeScape, consider volunteering!
Thank you for your support in just reading my blog in itself. Support comes in many ways, not just monetary means.
